Tag: Invisible Disability

To kick the month off right, let’s have a brief discussion about Multiple Sclerosis. I talk a lot about having MS, but I haven’t provided information to why it’s such a troublesome disease.

Part of the reason is it has taken me until writing this post to acknowledge the down-and-dirty parts of MS. For the last five years, I have allowed myself a vague awareness of the disease itself, but never sat down and understood the particulars. I would research as far as I needed to, but rarely allow myself to dive deeper because it was too painful to acknowledge.

In fact, if we’ve ever had a conversation in person about my MS, I rarely use the word “disease” when discussing it. You’ll find it to be the same throughout the blog. I don’t like acknowledging that I have a disease. I prefer to use the term “condition” or “situation.”

I recognize that if I am ever to be truly successful in treating and managing my MS that I need to be fully aware of the risks, outcomes, and possibilities of the disease.

What is Multiple Sclerosis?

Multiple Sclerosis is an autoimmune disease that causes the demyelination of the central nervous system. These attacks will disrupt signals from one part of the body to another which are expressed in a variety of symptoms: fatigue, brain fog, weakness, speech difficulty, and more serious manifestations.

Because MS is autoimmune, it means that the body attacks and damages itself sometimes beyond repair.

Relapse-Remitting (RRMS): symptoms appear randomly and can range in severity. Once treatment of the symptoms is complete, the patient will return to “normal,” though some symptoms may persist after the flare-up. The disease progresses slowly if at all. 85% of new diagnoses receive the RRMS classification.

Primary-Progressive (PPMS): neurological functions worsen at the onset of symptoms though there are no distinct flare-up or periods of remission like with RRMS. 10-15% of new diagnoses receive PPMS classification.

Secondary-Progressive (SPMS): Around 50% of RRMS patients will progress into SPMS within 10 years of their initial diagnosis (specifically those who do not treat their MS). This is a progressive worsening of symptoms and neurological functions over time.

It is estimated that around 2.5 million people globally have the MS diagnosis.

Why Raise Awareness

As someone who has MS, it is extremely important for me to raise awareness for the disease. The more people know about it, the more funding will go towards finding better treatments and hopefully a cure. Unfortunately, there are a lot of misconceptions about MS and the very nature of the disease can be invisible which is why awareness is so important.

Busting misconceptions

Getting the MS diagnosis is not a death sentence. Fifty or so years ago, before anything was known about the disease or ways to help treat it, it may have been. But now that there are so many disease-modifying therapies out there and complementary treatments, it is easy to manage the disease and help slow its progression.

No one is the same. If you have MS it is not going to look like mine nor is it going to look like your friend’s cousin. Yours or your loved one’s experience with MS is going to be unique to you and that’s okay. Do not compare yourself to others.

Start that family if you want. If you are physically, financially, and emotionally capable, the decision to have a family should not be decided by the MS diagnosis. While there may be a genetic component to the disease, you are unlikely to pass the disease down to your children.

No, it is not spread through the blood. Unfortunately, many blood-related organizations are still very backward when it comes to their information about MS. The Red Cross recently opened it up so people with MS could donate blood, but local and smaller blood collection agencies may reject you if you disclose your diagnosis.My heart was broken when Jai’s cord blood donation was rejected based on my MS diagnosis. They claimed they would use it for MS research but I have no way of following up with them.

An Invisible Disability

MS is a disease that can external and internally manifest itself. People with mobility devices like canes or scooters, or have handicap allowances outwardly express their MS so outsiders can be more accommodating.

But there is a whole group where all the manifestations of the disease are internal: no devices, handicap provisions, or a way for outsiders to see that we have MS.

Just like people with mobility devices, allowances may still need to be made for us, i.e. opportunities to rest, take extra time to work on a project, or need a few days off to treat a flare-up, but getting those allowances can be met with resistance.

My one negative experience was weeks before my actual diagnosis. I just got out of the hospital from a 5-day round of intravenous steroids to treat my optic neuritis and was in a grocery store with my mother. I was extremely weak from the steroids, lack of sleep, and overwhelmed emotionally from the experience when I slowly rounded a corner with my cart (I needed it as a means of support) and an older man started cussing me out when I got in his way.

He was telling me that I needed to give way to him (I actually had the right of way in grocery store etiquette) due to his age and I needed to move quicker. I tried to explain that I was too weak but he moved my cart while I was holding it, cussed me out, and flipped me off as he walked away.

It was a humiliating experience. And I have been fortunate not to experience anything like it again.

There are plenty of drug therapies out there that help minimize the impact of flare-ups and the progression of the disease, but we still have a long way to go before getting rid of MS and reversing its damage altogether. By raising awareness we can help keep the research momentum going and hopefully see it disappear in our lifetime.

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In honor of MS Awareness month and week (March 11-17), MS//Mommy will feature a series on the following topics: raising MS awareness, getting involved, advocating for your health, dealing with an MS diagnosis, parenting with MS, and educational tools for family and strangers.

MS//Mommy blog has a new look for the month, so please stop by to check it out.

Raising Awareness on Social Media

I’ve made a series of banners and images that you are free to use to help raise MS awareness. These are free to download for personal use only. For professional use, please contact me.

Please do not remove the msmommy.blog credit on the photo and make sure to credit MS//Mommy in your post. Credit information for each medium found below.

What good is discussing diet and lifestyle changes if I don’t reveal the ongoing results?

Doing an honest self-assessment of any sort is hard, particularly when trying to find ways to manage an unmanageable disease. There’s a huge desire to make everything a “success” or engage in placebo effect-like thinking, but that isn’t always the case.

Overall, I feel like I am managing my MS better, but on a day-to-day basis, my mileage may vary because of various external factors.

Current Health Self-Check

Currently, I am not doing so well. Not necessarily because of the MS, but I have a weird seasonal head cold. Drippy nose, sore throat, and exhaustion. I can only assume that if a person without MS gets a cold like this they may feel wiped out but are able to go about their daily lives with minimal interference.

With MS and any illness, I get so wiped out that getting out of bed is a hardship. Ash had to stay home until Jai went down for his morning nap on Tuesday because I was so worn out. I needed the extra couple of hours of sleep this afforded me before I was able to start the day and take care of a toddler. Jai and I stayed in our PJs and read lots of books and minimized movement so I wouldn’t overdo it.

This is a key example of why getting sick with MS is “dangerous.” It won’t necessarily cause any physical harm, but infections are a key cause of flare-ups so there is a risk of needing to get steroids to treat the inflammation. I don’t get avoidant if I know someone is sick, but I do recognize that even a simple cold can knock me off my feet for a couple of days that might just inconvenience someone else.

Normally I wouldn’t write about getting sick factoring into how I am currently feeling because I tend to not get sick all that often, but since having Jai it has become a more common occurrence.

We don’t get to choose whether or not we get MS, nor do we get to choose when we get that diagnosis. For some, it comes while in a relationship and for others it comes outside of one.

Either scenario forces the following self-reflection: does my partner stay with me? and, do I disclose my situation on a date?

MS is difficult because it turns partners or potential partners into caretakers.

It fosters self-doubt after the diagnosis: is my partner with me because they feel obligated? do they resent having to care for me? are they only interested in me because they have to “fix” me? what happens if they leave or die before me?

It is little wonder that many bloggers and experts refer to MS as the third wheel in a relationship. It’s an unwanted obstacle that can put a strain on any current or budding relationship.

The Third Wheel

MS is the unpredictable cousin that comes into your life and needs a place to crash until they get on their feet. They take up space on a centrally located couch and refuse to leave when you want to watch a movie with your partner (or bring a date home).

They say they are looking for a job, but really spend all day watching half-hour courtroom shows with ads for injury lawyers.

It’s that cousin that interrupts you everytime you want to have a conversation with someone so you forget what you were saying and is up at all hours of the night making it hard for anyone to sleep.

Simply put: MS is an unwelcome third-party to your relationship that isn’t going to leave anytime soon. No matter how many times you ask it to get its act together and move on.

Trying to figure MS out and how it factors into a relationship is extremely hard. As a person with the diagnosis, I am trying to learn what I am capable of doing and what my limitations are. How much do I put on or ask of Ash? Should I even ask him to help? Is the relationship lopsided? Am I really that bad that I need his help? Or am I just imagining things?

MS is always hiding in the background of every thought or action I take. I have to plan out my day to make sure I have enough energy for when Ash gets home to make any interactions with him meaningful. I have to pause frequently and ask myself: am I feeling this way because this is normal for someone who only got 4 hours of sleep with a teething toddler, or is this because of the MS?

As you can see, I ask myself a lot of questions. I tend to overthink things and so it takes a lot of energy to manage my MS. So when it is time for quality time with Ash, sometimes I just don’t have what it takes to be the partner I think he deserves.

These posts are based on my personal experiences as a parent and are not meant in any way to judge other parenting styles or decisions. I am offering my personal research and conclusions as possible suggestions for others out there, therefore these posts will be as objective as possible. When it comes to parenting: provided the method isn’t abusive, there really isn’t a wrong way to parent your child. Be secure and do what works best for you and your family and ignore outside judgement.

In this final post of my “parenting observation series” I want to leave this as the major takeaway: we, as parents, are enough for our children. If we provide food, shelter, clothing, comfort, and education, no matter how imperfect it may be, we are enough for our children.

There is a lot of outside pressure on parents to be perfect and have it all: have the perfect house, job, relationships, food, clothing, education – the list goes on and on. No parent can ever win the external societal judgement game. The standards for good parenting as dictated by outsiders is so high that it can drive us bonkers.

For those of us with the added obstacle of a disability, seeing what parenting without a disability looks like can be even more discouraging. But our children rarely see the disability in the same way we do.

We must practice self-compassion and ignore everything the outside world has to tell us about our parenting abilities. The only people who need to be in our minds is our children and how they view us.

And surprise: our children will love us no matter what and overlook any perceived imperfections we think we might have. They are, at this point, incapable of seeing our imperfections.

Remember how you viewed your parents in early childhood: one parent was stronger than Superman and the other was the only perfect source of comfort. Sometimes both aspects manifested in one person.

Our children view us no differently. They don’t see the same flaws or recognize what we cannot do. What they see is what we are capable of doing and how that relates to them.

Nota bene: This post will be using the universal “you/second person” pronouns throughout, so while it may not speak to your experience directly, it may apply to someone else you know.

It requires a level of self-reflection that may be hard to swallow, but in the end it helps us grow as adults too.

Saying “I am Enough”

All of this isn’t to say that we should go out and purposely fail, but to acknowledge in a gentle way that it will happen and that’s okay.

Focus not on any failings you might have such as “I could have done this differently today,” or “I could have handled that situation better,” but on what they teach you and all the positives you did throughout the day. Our brains are wired to focus only on the negative, so it is important to rewire them to allow the positive in more often.

If something happens that makes you feel like a failure, try these steps to work through it:

Apologize to your child if necessary even if they are too young to understand. It’s a good habit to get into and makes it completely normal for them when they are aware of it.

“I am sorry I yelled at you when you took off your diaper and got poop all over the floor. I was upset over the smell and the mess I would need to clean up. I understand that you are not aware of how much I dislike poop, so I am not upset with you, just upset over the situation.”

Figure out what you could have done differently and create a plan of action should the incident happen again. Spoiler: it probably will.

Take a few minutes to breath and comfort yourself. If you are tense or stressed out, make a cup of tea and allow yourself a few sips before continuing about your day.

Forgive yourself for that failure. Remind yourself that you are not perfect and that is okay.

Find a couple of things that went right during your time with your child. Focus on them any time you start to think about something negative.

“We sat and read three books, one of them being my favorite. I could tell my little one really enjoyed my favorite as well.” or “We ran around the chair for 5 minutes laughing at each other over how silly we were being”

Repeat to yourself: “I am a good parent/caretaker, I do the best I can, I am enough for my child.”

All of this will take some time because we have to undo years of bad habits, but starting off slow will help build confidence and self-compassion in our abilities as parents. These examples will benefit our children in the long run. It’s really about focusing on what we are able to do – not what we can’t do.

And remember: you will always be enough.

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